In Sickness and in Health: Making Love Last While Living with Chronic Illness

In my work as a sexuality educator, I’ve helped people improve their relationships by stressing that communication is one of the most important components of a lasting, healthy relationship. But the importance of communication is even greater when chronic illness butts in, no matter what stage of the relationship you’re in.

I should know, because I’ve been chronically ill for most of my life, which means every relationship I’ve had has been impacted in one way or another by my illnesses.

All this wisdom comes from a lot of experience

People might think I am an amazing communicator because of my field of work. Heck, sometimes I expect myself to do better because of my profession, too. But disclosing hidden and chronic illnesses is never easy. Personally speaking, I decided early on that it was best to reveal my illnesses immediately in relationships that I thought had potential. It hurt too much to get attached only to have people leave. Some people didn’t understand, and others thought I was making stuff up.

Looking back on my disclosure with my current husband, I knew we had the potential to evolve into a long-term relationship. On our very first date, I told him I had “some arthritis thing,” and his response was basically: “OK, I want to learn about it.” Introducing it that way made it easier for us to handle and progress.

But just because he initially accepted my illnesses as a part of me doesn’t mean that everything has been easy ever since. It’s a constant learning process with chronic illness, both for the partner and for the person living with it. Keep these tips in mind when you’re trying to maintain a healthy relationship while one or both of you are living with chronic illness.

Discover your easiest communication styles

Not every form of communication works for every person, so it’s important to find out what works best. When I first started explaining my illnesses to my husband, I could really only talk about all of this via writing. Some of my friends keep a shared file online or email each other or text, even if they’re sitting together.

For me, the so-called “spoon theory” has been an effective method of talking about my unpredictable energy levels in a way that doesn’t make me feel weak or flawed. I’ve also come up with language that I use to signal when I’ve reached my halfway point of energy. If I hit that point when my husband and I are out snowshoeing or walking, I just say “bingo fuel” (we’re history nerds and bingo fuel is the point where old pilots would have just enough fuel to get back to base). I still don’t use it as much as I should, but it’s a handy communication tool for us.

Keep in mind you and your partner(s) may not have the same communication styles, either, so this may mean that compromising is in order.

Try to use more empathy in your dialogue

Empathy seems to be a bit of a buzzword these days, but it’s an incredibly important tool. Empathy is really supporting and understanding someone else. It’s taking that extra step to walk a mile in someone else’s shoes. Listen to your partner share their experiences, and try to picture how you would experience certain things if you had those same challenges.

It’s hard for people who have not encountered chronic illness to understand everything it encompasses. My husband was one of those people. At first, my focus was to communicate the big bad bits, like expected complications, triggers, etc. That was easy enough to do with the research and life experiences I had up until that point.

The harder things to express, like fatigue, how draining pain is, and fluctuating limitations, are the kinds of things I’m still working on a decade later, which can lead to frustration. Which reminds me …

Use ‘I’ language during arguments

‘I’ language is really helpful during an argument with your partner. When we’re frustrated, many of us tend to say why the other person upset us or what they did wrong. Instead, try to focus on explaining why you feel upset without attacking the other person. You’re coming from different places, after all, so it’s better to share where you’re coming from rather than attacking where you think they’re coming from.

This can make for easier solutions to arguments before they get too heated.

Be vulnerable and fearless

It’s really scary, I know. Still, it’s the best way to be our truest selves with our partners. Everyone involved deserves that level of intimacy and connection, especially when you live with a chronic illness.

A lot of people don’t necessarily realize how impactful chronic illness can be, and that was just as true for me as it was for my husband. I thought that I could hide the worst parts of my illnesses from him, that I could somehow be stronger by appearing more abled than by accepting some of my limitations.

I was wrong.

Communicating the pain I’m in, the energy I don’t have, and other details of my illnesses is difficult. There aren’t words to express some of this, but it’s also just hard to talk about. So much of my life has been spent on being stronger than I really am and just pushing through whatever I’m facing. In order to share these things with my husband, I have to admit that this is reality — that I’m really hurting and am scared and don’t know what to do. Revealing those fears and frustrations can be incredibly powerful for you as an individual and as a partner.

Remember: It’s a continuous process

My last major tip to keep in mind is that the learning never stops.

Case in point: My husband and I have been together for nearly a decade and just finally had our first real fight. Neither of us like conflict, which is mostly why it’s taken so long. Ironically, it was all about my illnesses and what has happened in our lives because of all this.

I was building a new pantry alone and made a snarky comment about him not helping once I was done. He retorted with asking me how my nap was that morning — the nap that was actually my only sleep in almost two days because of pain.

I’ll be honest, I was really hurt by that comment. I still am. But I also understand where that was coming from. Just because I know I’m in pain or dealing with issues doesn’t mean my husband knows. I can’t just say that I’m hurting and expect him to understand how badly.

This means that I’ll be working on even more communication skills and figuring out how to quantify pain and my frustrations in the right way. Like I said, the learning never stops.

Kirsten Schultz is a genderqueer writer from Wisconsin. Through her work as a chronic illness and disability activist, she has a reputation for tearing down barriers while mindfully causing constructive trouble. Kirsten recently founded Chronic Sex, which openly discusses how illness and disability affect our relationships with ourselves and others, including - you guessed it - sex! You can learn more about Kirsten and Chronic Sex at chronicsex.org.